Thursday, May 3, 2018

December 2017
I spent a lot of time trying to "winterize" Elena's trike. I made a clip-in shoe by putting the screw plate in an old sneaker, and attaching a SPD cleat (this typically wouldn't work for kids b/c pedaling with this on a soft shoe, like a sneaker, would bruise the foot; b/c E wears SMOs, it's fine). I also found a trike trainer, which was gifted to us by SportCrafters--it's a roller designed for single drive cycles (like E's trike, which has a single-rear drive). We try to practice 2x/week, but with her schedule it can be tough. Elena likes to try different positions on her trike, which is great--but these don't work as well off the trainer (she can tip). My goal with the clip-ins is to try to work on her endurance (we are at 20+ minutes on the trainer) and try to have her realize where her foot should be on the pedal when she rides (often she puts her heel on the pedal instead of the ball of the foot).

Shoe, cleat with pedal attached (note angle of the cleat position)

The Mule with roller trainer

Shoes on pedals. Note that the toe is angled outward to accommodate E's anteversion.

I added pedal extenders so E's knees won't hit each each other as she pedals. I am holding a smaller size, while the larger extender is mounted on the bike (my finger is touching it).

Our big event was we went to New York for Christmas! We have been to The City several times, and feel pretty comfortable getting around--but this was the first time in cold weather. And it was cold. This means lots of layers, and navigating transportation and layers with crutches/wheelchair.

Jason managed to snag a hotel close to Central Park. This would have been perfect in the summer, as we did a lot of walking; it was so cold, we didn't go far on foot. It was icy and slick in places, and when Elena is bundled up, walking is pretty cumbersome (winter coats with the loftstrand cuffs, especially!). The issue with hailing a ride so close to Central Park, once you get in the car, you literally don't go anywhere for at least 10 minutes--which makes walking, for most folks, a lot quicker than riding. In general, we took the chair with us; there were plenty of times we didn't need it (but still, better to have it just in case!).

Central Park carriage ride

Baroque Christmas tree

We enjoyed seeing lot of decorations, lights, and shows (including The Nutcracker and our favorite, the Brandenburg Concerto).

Macarons in Bryant Park

Modern Pinball

Overall, the trip was a success, but navigating the city is much easier when the weather is warmer.

January 2018
Normally I put together yearly goals each New Year. The short list: (Amy) visit Antelope Canyon, work on jogging and biking; (Jason) rehab to be able to run his races/marathon; (Elena) complete the neighborhood bike loop (very hilly), visit Paris (?!); (Vivian) see Spanish dancing, go snowboarding, run a business (she wants to make her own shop).

E was inducted into the Astronomy Society here, in the first group of the Future Astronomer's Club. She can find stars using her telescope, use a sun scope, and identify a few constellations. It's a great group!

January was kind of a mess, given that's when we received Vivian's epilepsy diagnosis. We still managed to go skiing (E did a great job on her 4-track skiing, and Vivian learned to snowboard!), but the weather didn't cooperate so we only had one opportunity (short winter).

4-track

We also decided late 2017 that Elena would do less physical therapy and more personal training--the idea here is she would be doing more exercise in an age-appropriate setting (our therapy center is more focused on younger kids). We set out to find a personal trainer who would be fine-tuned to Elena's needs, as well as any other appropriate group exercise settings. She was a part of a short-lived group of disabled women, which she loved (unfortunately the group fizzled...we're working on other options).

Pumpin' it up with J at The Gym

February 2018
I went on a Tanzanian Adventure. It was incredible! (That's the short version).

Lion. NBD

At the Serengeti airport waiting on a bush plane. I'm nervous.

We switched Viv's meds from Keppra (it left her practically comatose, and that was below the working dose for her age/weight) to Trileptal. Short story here is, we're still trying to find a med that works.

March 2018
Just trying to keep up. Elena is doing relatively well keeping up her schedule: before school 3x/week, Bearettes (elite chorus), DnD club (gaming) 1x/week; after school she has PT (every other week, Mondays), Personal Training (Tuesdays), Psych (most Wednesdays), workout group (Thursdays), and Personal Training (Fridays). Weekend is bike or swim. (sounds like a lot b/c it is; E is done weekdays by 530 at the latest). For Vivian, she has baseball 2x/week (games and/or practice), goes to the climbing gym with me a few times a month, and plays with friends regularly.

5 comments:

Anonymous
said...

I have SDCP like Elena. I found personal training extremely effective at her age. I also found martial arts that were modified for crutch users to be AMAZING. Would Elena like martial arts? I hope Vivian finds medication that works best for her ASAP!M.http://www.cripvideoproductions.com/astrokeofendurance.php

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.